achieving excellence in clinical health - plenary talk
TRANSCRIPT
We focus on a world where biomedical research is about to fundamentally change. We think it will be often conducted in an open, collaborative way where teams of teams far beyond the current guilds of experts will contribute to making better, faster, relevant discoveries
helping data users work together,
when they don’t work together.
TCGA Pan-Cancer Consortium
doi:10.7303/syn1710680.4
TCGA Pan-Cancer Consortium
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groups datasets subtypes
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G ...
Selected Hosted Consortia and Projects
DREAM challenges
NIH-Alzheimers Accelerating
Medicines Partnership
Common Mind Consortium
Cancer Genome Atlas Pan-
Cancer Consortium
Colorectal Cancer Subtyping
Consortium
1.
machine learning is coming for
research…
a different approach to hypothesis formation…
requires sample scale, longitudinally…
To predict whether or not we’ll click on ads, Facebook /
Amazon / Google use sample sizes in the hundreds of
thousands.
To predict whether or not we’ll click on ads, Facebook /
Amazon / Google have longitudinal data on individuals.
where i’ve been,
where i’m going
689,003 people
from 1800 to 100,000
2.
how can we increase informedness in mobile or digital
consent?
(not informed consent)
comprehension
language
time
format
regulatory
liability
1. series of interviews and requirements gathering
2. interaction design process and prototyping
3. consent development
gait
balance
voice
tapping
1. tiered information access by participants
2. “pictorial” dominant on first information tier
3. text dominant on second information tier
4. require perfect score on short assessment
initial metaphor
28
mPower (Parkinsons Disease)
Share the Journey (Breast Cancer Survivor)
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changeable by participant
>70,000 enrolled since 9 March
(~75% choose to share broadly)
iconographic
representations of
key concepts
in informed
consent
open source methods
design layouts
workflows
web templates and assets
3.
implications for practitioners
is a design illuminating, or obscuring?
drawing eyes to
second cheapest
ticket
how to reconcile tech culture
and clinical research?
where’s the line between hope and hype?
where’s the line between patient engagement and targeting?
